Meeting with the Surgeon

Today we met with the last of the specialists that will be involved in Payton's care - 1 of  the 4 surgeons that are qualified to do Diaphragmatic Hernia surgery.

The meeting was fairly quick and mostly he answered questions with a little bit of additional information for our general knowledge.

One of the things that resonated with us was his comment on CDH in general.  He said that out of all birth defects a baby can have, Diaphragmatic Hernia has the highest death rate.  Its a stark reminder of how little this condition is understood or appreciated.  As I've mentioned in the past, we breathed a huge sigh of relief when we first heard our baby had a birth defect that it wasn't something 'serious' like a heart defect.  How incredibly wrong we were and our meeting today really confirmed how much we simply don't know in regards to how well Payton will do when she's born.

That said, he did answer some questions we had that will allow us much more insight into what she will (hopefully) be going through once born.

With CDH repair they hope that the hole in the diaphragm is small and they can simply close it up with stitches.  That is the best case scenerio in regards to the hernia repair.  Re-herniation is less likely and the diaphragm then grows with the child, hopefully with no further complications.

Often times the hole in the hernia is quite large and there isn't enough diaphragm present to pull it closed, thus they have to use a patch (our doctor today uses gortex).  The patch is ok, but not ideal for no other reason than its less pliable than skin, thus as the child grows, the patch doesn't and often (40% of the time) re-herniation is likely thus requiring additional surgery as the child gets older.

There's also the risk of Scoliosis.  Its when the spine has a curve to it and it can be caused by a too tight diaphragm.  If a gortex patch is used and there's not enough natural diaphragm left to grow enough to compensate for the missing area, then it can pull on the childs spine causing a curvature in the spine of the child. 

It was confirmed that the surgery (in an ideal situation) will occur on or around day 4-5 after Payton's born.  They have found that waiting till the baby stabilizes with his/her breathing for a few days equates to much better handling of the stress of the surgery.

We've been told that its common (90%) to have to have a blood transfusion (not just for surgery reasons) so we know that likey its in her future.  We have asked about whether we would qualify to donate blood for her but have been told that the time to process the blood would possibly take too long and while its possible, donating blood to her could result in her sometime in the future building up antibodies to our blood therefore not allowing us to donate later (or if she ever needs an organ donor we may eliminate oursevles as a possiblity).

I'm pretty sure I'm missing other points that were discussed but for now this pretty much covers the gist of some of our questions and expectations.